St. Louis, MRI & my mommy heartaches.

Today was a long one- and I know it will have nothing on tomorrow.
We left our house early & got to St. Louis around 1030. Emmaus had a sedated MRI & then we met with her surgeon to go over details.
Everything went smoothly. The meeting with the Neurosurgeon to talk about details was a bit more of a reality check then I was ready for. (I kinda smirk when I type this-cause clearly I will get a reality check tomorrow regardless of if I am ready).

The medical stuff doesn't bother me- I get the risks, I know the standard set of complications- yada yada.
It is the mommy stuff that gets me.
The fact that my baby's perfect little noggin is never going to be the same- that she will have a big scar. I get a little emotional as I run my fingers in her hair knowing her scalp will have a large "ridge" come tomorrow. That her cute little pigtails will be absent for a time.

I think as parents we have such an instinct to protect our children. And while we are protecting her from her own body- from her missing gene sequence that is wreaking havoc on her- and ultimately it is protection...right now it doesn't feel quite like that.  I know my girl. She is fearless- she is happy and she is strong. I know all of these things are so much of a bigger deal to me than to her- but right now my mama heart is just a little sore, a little tired, and pretty sad for my baby.

That being said we feel so overwhelmingly loved. Our parents & best friends have come down for the surgery/recovery. We have about every person on the planet praying for us it seems. Seeing people's words of encouragement/prayers on instagram, FB & texts have been so amazing.
I feel peace tonight about her surgery. I know it will be a long few hours, however I feel peace.  And I feel hopeful.

Surgery starts around 10am tomorrow and will last about 4-6hours. The tuber they are removing is big- the size of a ping pong ball or larger- which considering her noggin size is pretty big.
I plan to drop my baby girl off in the capable hands of our surgery team, listen to my ipod and then watch some downton abbey (rumor has it I may or may not have myself a copy of season 3-AND I DON'T EVEN FEEL BAD ABOUT IT). So there it is.

Okay I am going to get back to my little girl who is rolling around on our bed just chatting my sadness away.



  1. praying praying praying praying praying praying praying praying. couldn't get you guys out of my head today. love you all so much. i hope you take a tylenol pm tonight and have a peaceful sleep. every time I pray, I just keep hearing God say, "Kelsey, I love that girl so much more than you do or even her parents do. I got this." praying praying praying praying praying!!!


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